Closed Doors

Kerissa • August 2, 2013

In my previous post, I mentioned how my geneticist referred me to a different place for further diagnostic work-up for mitochondrial disease, but I kept it sort-of secret in case it didn’t work out.  Well, that’s just what happened.  I learned that Boston Children’s has an extensive metabolism program, and it sounded amazing.  But….I got a phone call yesterday that the doctor (after thoroughly reviewing my records/referral) thinks it’s best that I just stick with Cincinnati and receive all my care there as he doesn’t think he would have anything new to offer..

I am just so thankful for the Lord’s guidance in opening and closing doors!  Even though this door is closed, there are many more doors that can open!

All that has happened has been such a great learning experience, and it constantly reminds me to fully rely on God for wisdom.

So here’s the plan:

1. The referral/records review process in San Diego takes 4-5 weeks, and thankfully, next week will be 5 weeks!  We will see what this mito specialist says..

2. Even if he is willing to see me, that still probably wouldn’t be till next year as he is booked out.  So I’m researching other mito specialists that could possibly see me in the meantime.

3. Washington and Los Angeles is currently off the list.  So I’ve been checking into other places across the nation.  Looking on the bright side, having a complex medical case means I can travel when I wouldn’t otherwise!

In other news, cardiology on Monday went well. In the middle of July, I stopped the saline infusions because sadly I didn’t notice anything, and my “good” vein in my right arm is developing too much scar tissue from countless IVs and blood draws. This in turn made it difficult for the nurse to keep placing a new IV every time which aggravated the CRPS pain! So in a way, I’m glad to have stopped the infusions. 

Dr. A wants me to try a combination of two meds for the dysautonomia, but I won’t try them until I see a mito specialist.. 

This coming Thursday on Aug. 8th, I have another heart echocardiogram scheduled because she wants me to get a current baseline for this year.

******

This is totally random, but do you need a good laugh? Read these below. 


Amusingly Monday
Amusingly Monday- A Weekly Dose of Monday Smiles

Have a good rest of the week!

October prayer request

By Kerissa Lee • October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

Praises & Prayer Requests

By Kerissa Lee • September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23